Tuesday, July 27, 2010

Report on the 7/26 CCSVI Symposium

First and foremost, I'd like to thank everybody who sent get well wishes via the the blog and e-mail during my recent illness. They were all deeply appreciated, and helped keep my spirits up when the going got tough. Since I want to report today on some timely CCSVI news, I'll report fully on my getting sick and subsequent hospital stay later in the week, but for now, suffice it to say that Multiple Sclerosis sucks. Big time.

Before I begin on the main topic of today's post, which is a report on a CCSVI symposium that was held on Monday, I'd like to direct everyone's attention to CCSVI.org (click here), the Internet home of the CCSVI Alliance, a nonprofit advocacy organization dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI). I'm proud to be on the patient advisory board of the CCSVI Alliance, and hope to be very active in helping them in whatever way I can. And now, on to the primary topic of today's post...

A symposium on the "vascular theory of MS" (these days known far and wide as CCSVI) was held Monday 7/26 at SUNY Downstate Hospital in Brooklyn. Organized by Dr. Sal Sclafani, who did my attempted liberation procedure back in March, the symposium was attended by many of the heavy hitters in the world of CCSVI, including Dr. Tariq Sinan of Kuwait, Dr. Ivo Petrov of Bulgaria, Dr. Gary Siskin of Albany, New York, Dr. Fabrizio Salvi of Italy, Dr. David Hubbard of San Diego, California, Dr. Mark Haacke of Detroit, Michigan, and, of course, Dr. Sclafani himself.

Because of my recent health issues, my stamina is a bit low these days, so I missed the morning sessions, which dealt primarily with an overview of CCSVI and some of the imaging techniques used to identify the condition in patients non-invasively. I did attend the afternoon presentations, though, which included talks by Dr. Sinan, Dr. Petrov, and Dr. Siskin. All three physicians have been doing CCSVI procedures by the dozens, and between them account for over 400 "liberation procedures". They each related what they've learned treating patients for CCSVI, including case histories and some of the techniques they developed as their knowledge base and experience has grown.

Rather than give a blow-by-blow account of each presentation, I'll relate some of the general themes that emerged, and the pertinent "take away" points that were made by both the presenting doctors and the physicians in the audience. The one overarching theme that seemed to encompass all that was said is that we are at the very beginning of our understanding of the proper techniques and procedures used to treat the condition known as Chronic Cerebrospinal Venous Insufficiency. There is much more that is not known than is known, and the point was made several times that even for very experienced interventional radiologists, the treatment of CCSVI is a whole new ballgame, requiring brand new skills, techniques, and expertise. The treatment of CCSVI is definitely still a work in progress.

Though all three of the physicians whose presentations I watched agreed that there is strong correlation between MS and CCSVI (which is becoming more and more to seem like a given), there was much polite disagreement over the best methods and techniques used to treat the condition. The physicians differed in their opinions of the size of the balloons used during balloon angioplasty procedures, precisely which areas and degrees of stenosis warranted treatment, and the safety and efficacy of the use of stents.

Dr. Sinan, who is leading the Kuwaiti effort to treat as many of their MS patients with the liberation procedure as possible, has made significant use of balloons much larger than those used by other physicians, and has forgone the use of stents (due in large part to the orders of his government). He did state that aggressive balloon angioplasty procedures largely negated the need for the use of stents, and was quite adamant that treating valves in the lower part of internal jugular veins cleared up most of the problems seen higher up in those same veins. The other two presenting physicians were more open to the use of stents, but only after balloon angioplasty had failed repeatedly to open narrowed areas of the veins in question. The general consensus seemed to be that the use of stents should be considered a last resort, but that their safety and efficacy profiles appeared to be well within acceptable parameters.

One physician in the audience did caution that stents placed in the veins of dialysis patients (who, up until CCSVI came on the scene, were the patient population that most often received venous stents) had a patency rate of only 50% after one year, meaning that half of the stents failed within one year of implantation. Since the treatment of CCSVI is such a new endeavor, not enough time has elapsed to allow us to properly assess the durability of stents placed in the jugular and/or azygos veins. Certainly, it would seem that stents designed specifically for venous use need to be developed.

Dr. Petrov and Dr. Siskin were both more open to directly treating stenosis seen higher up in the jugular veins then was Dr. Sinan, who, as I mentioned before, is of the belief that treating lower stenosis had the effect of clearing up most of the abnormalities found higher up in the jugulars. Dr. Zamboni, the originator of the CCSVI hypothesis, also believes that treating stenosis lower in the veins very often negates the need to address higher stenosis.

All three doctors noted very low complication rates despite their different approaches and techniques, and also noted a fairly wide range in the effectiveness of the procedure from patient to patient. Dr. Siskin made a very strong case for managing the expectations of patients, who, although they may be very educated and logically understand that the CCSVI procedure will not likely "cure" their MS, can't help but hope for a miracle cure, given the insidious nature of Multiple Sclerosis. Dr. Siskin displayed a slide that clearly showed that one third of the patients he treated experienced very significant symptom improvements (most often involving cognitive, heat sensitivity, and balance and coordination issues), one third experienced slight improvement, and another third experienced no improvement whatsoever. The doctors did note that treatment efficacy didn't appear to be dramatically better or worse across the different "flavors" of MS (RRMS, SPMS, PPMS), although one of the doctors (in all honesty, I can't remember which one) did say that he saw some very good results in SPMS patients.

I was struck by how often the interventional radiologists doing the presentations referred to the fact that treating CCSVI was unlike almost anything they had undertaken before, and that there was quite a steep learning curve in "getting it right". Patients need to be wary of doctors jumping on the CCSVI bandwagon without the necessary experience to properly perform the procedures required. Dr. Siskin commented that he thought treating CCSVI would be a relative piece of cake, given his wealth of experience treating blocked arteries, which in reality makes up the bulk of the work that almost every interventional radiologist does. He was very surprised at the challenges presented by treating the veins associated with the central nervous system, and emphatically made this point during his presentation.

In summary, the symposium was a fascinating glimpse into the evolution of a treatment protocol that is in its infancy, and really raised more questions than it answered. The value of the knowledge being passed from physician to physician during the symposium was immeasurable, and I'm sure each left the meeting with far more understanding about CCSVI and its treatment than they had at the beginning of the day.

Unfortunately, although there were neurologists in the audience, the neurologic aspects and implications of the CCSVI hypothesis were not really touched upon; instead the technical aspects of treatment by interventional radiologists was the subject that ruled the day. No surprise, really, since the symposium was organized by an interventional radiologist, and IR's were doing the presentations. Two very good neurologists that work with my neuro were in attendance, and I'm anxious to hear their take on the proceedings. I think it's vital that the interventional radiology and neurology communities come together to fully explore the implications of CCSVI, not only for the betterment of science, but more importantly, for the betterment of patients so desperately in need of effective treatment.

Thanks again for all of the well wishes sent my way during my recent hospitalization and recovery. I'll get into the details of all that happened in my next post, so I'm sure you'll all be waiting with bated breath for my next entry, a tingle with anticipation. Here's a little teaser: my hospital roommate was a homeless man, who, despite his initial distrust and belligerence, and my miserable condition, I managed to become good friends with. We're all in this thing together, folks, and the only way out is through...

marc,curious if there was any mention with regards to areas that were unfamiliar at this point like vertebral septums, lumbar veins, etc? Also any talk about correlation between symptoms and areas of stenosis? Lastly any discussion on timetables of this becoming an approved treatment??clock is ticking!Greek

Hi Marc, Great to finally meet you yesterday! I am proud to be serving on the patient advisory board with you. Wanted to add to your very fine summary. Dr. Salvi, the neuro who works with Dr. Zamboni gave a presentation in the morning session. He commented on his frustration with his neuro colleagues resistence to CCSVI study. Then Dr. David Hubbard, another neurologist, did a fascinating presentation on his fMRI studies. He expressed shame that he is a member of a community of doctors who are so vehemently opposed to considering the role of CCSVI in MS. I assure you they gave your neuros plenty to think about!Take care, Nicole

Marc:So glad to hear from you and discover that you sound fresh and upbeat.I've been doing a lot of searches myself and currently am very hopeful on a new venue not only for MS but for a majority of auto-immune deseases.It is a theory of intestinal "bad" bacteria overgrowth.Within the last month I found several articleson this subject: Ca institute of Technology on MS, Virginia Tech on inflammatory bowel deseases like Crohns, Harvard research on rheumatoid arthritis and diabetes I. What is interesting they do not reference each other and seem to come to this conclusion independently:We originally have "good" and "bad" bacteria in the guts. The "good" one is an important part of immune system. With extensive use of antibiotics (or possibly other enviromental factors) "good" bacteria gets destroyed (along the "bad" ones) and cannot get restored without introduction of probiotics. It is so called disbacterios.

Apparently "bad" bacteria consists of protein similar to a healthy tissue. So the immune system attacks "bad" bacteria and then turns on a similar protein in a healthy tissue, thus causing autoimmune deseases.

I am told that gut bacteria cannot be grown in a Petri dish and corresponding antibiotics could be found only thru genome studies.Probably different antibiotic followed by probiotic for a different desease or maybe even for a specific patient.Turns out we have hundreds of TRILLIONS of bacteria in our intestines.As you mentioned before, vascular problem could be secondary.Thanks again for all the work you do. Anna

Thank you for your summary - really helpful.I am SPMS, just had the procedure (lots of angioplasties) and am shockingly, amazingly improving. I was just hoping to avoid getting worse - was EDSS 7 - and I'm getting better. This is all so wonderful.

Thank you for your post and dedication to understanding and 'reporting' treatment of CCSVI. I'm sorry to hear you've not been feeling so hot and were hospitalized :( but and relieved you're out....I'd really, really miss your posts.

Another wonderful doctor in attendance performed the angioplasty 'Liberation' procedure on me in June; Dr. Marcial Fallas, Costa Rica. He is another name that we will hear over and over going forward too!

I've been suspicious of a gastro-intestinal problem prior to MS rearing it's ugly head, when I spoiled my insides with over doing it on strong alcohol (lucky I didn't die of alcohol poisoning). I drank 1/2 a bottle of scotch whiskey straight down as a kid :( Spent years trying to solve digestion problems, White coating on the tongue, a sign of good gut flora out of balance.Ho Hum :(

Thanks Marc for this post, Hoping you are feeling better and will be able to benefit from all this knowledge sharing soon. I also have a difficult to balloon azygous, but benefitting from the opened jugulars, and am hoping for much development in technology and technique through rigorous study in proper research settings. In the mean time I'm pleased to be able to have been a guinea pig to help my brilliant doc learn more about CCSVI., and prepare to do such a study.

Thank you also for joining the CCSVI alliance, I expect great things to come!

Thanks Marc, I hope that this post is a sign that you are indeed feeling better.

Thanks for the post and update on CCSVI, because it seems very factual and not pushing one way or the other as far as for or against. On some MS sites there seems to be quite a bit of arguing regarding this subject. This is why i look forward to your updates.

I am a believer that CCSVI will eventually go a long way in helping MS symptoms, just waiting for a little more research.Thanks,Ed

I was probably one of the reasons Dr. Siskin mentioned the angioplasty was difficult for him. One of his colleagues had lot of trouble with my azygus (Dr. Englander). She stuck with it and opened it up and I am forever grateful that she kept at it. My heart rate shot up and stayed in a-fib for 8 hours before coming down through medication. Anyway, I'm glad they are doing what they're doing and I feel great.

Thank you SO much for your excellent report. I've been anxiously waiting to hear the details of the symposium, and your report is so helpful and informative. Also, kudos to you and all for the fabulous CCSVI Alliance website. Sending positive, healing thoughts your way.

Marc, sorry to hear about your recient illness. I hope you are feeling better.. Thanks for the sumary on the CCSVI symposium. One thing stuck out to me, you said the Dr.'s mentioned about the steep learning curve and doing the procedure is alot different than what they usually do. Anyway most of the people on thisisms preach about "going local" well most of the local doctors i have talked to dont know much about this, and are not interested in doing this procedure. so instead of saying "go local" and guarding the namesof doctors, they should help people find doctors that want to preform the procedure and are qualified to do so... just my thoughts

Thanks for the write-up and I'm glad you're feeling better! I'm surprised that stent safety didn't seem to be a big concern. I thought that was the big drawback for using stents, that they could potentially come loose. Has that issue been reconsidered?

Marc, thanks so much for this comprehensive overview, especially in light of the fact that you have been feeling even less well than usual. :(

I am not one bit surprised you made friends with a unique individual in the hospital. That seems to be one of your greatest talents, seeing below the surface. Or really loving the offbeat surface from the get-go.

Hi I dont know if Neuros play a large or any part in this at all, it could be kinned to water damage to the electrical system of a house when the drain is blocked, fix the plumbing and the problem is rectified......those Neuros who have an objection are only having a reflex action to being told everything they ever learned about MS is incorrect......

As you said, here was a very little about "vascular theory of MS" and more about procedure.Looks to me like a plastic surgeon meeting - they dont care why or do you need a boobs job, they care only to do it right and get payed properly. Sad.M.

UNFORTUANTELY THEY DONT KNOW ANY MORE THAN THEY DID RIGHT AFTER ZAMBONI. THIS THING IS COMPLEX AND SO MUCH TO LEARN. THE IMPROVEMENT THEY BRAG OF SEEM QUITE VAGUE AND VERY INCONSISTENT. MS IS THIS GIANT UMBREALLA AND ITS LOOKING LIKE CCSVI IS JUST ANOTHER SUBSET UNDER THE UMBRELLA. I AM SURPRISED DR SISKIN IS SO COMFORTABLE WITH STENTS WHEN ZAMBONI AND SCLAFANI ARENT. THIS CCSVI IS ALL OVER THE PLACE. FRUSTRATING TO ME BUT SEEMS THAT THE MEDICAL WORLD IS CANVASSING ALL THE TESTING CENTERS AND NOT ALLOWING THEM TO PROCEED. TRY TO CALL A LOCAL GUY AND GET AN ULTRASOUND. YOU CANT EVEN GET A CALL BACK. HERE WE CONTINUE TO GO TO HELL IN A HAND BASKET AND WE HAVENT GOT ANY FURTHER WITH THIS DISEASE THAN THEY DID 100 YEARS AGO. WHY WOULD OPENING ONE GUYS VEINS ALLOW HIM TO RUN UP STAIRS, AND OPENING ANOTHER GIVES HIM WARM FEET AND THATS IT? IF THE MEDICAL WORLD WOULD CONCENTRATE ON WHY THEE IMMUNE RESPONSE IS THE WAY IT IS AS OPPOSED TO MAKING MEDS TO CONTROL IT WE WOULD BE MUCH FURTHER. BA HUMBUG!

Where and when, will a listing of Interventional radiologists and treatment centers, be made available for those living in the USA, of USA locations? For Instance, here in southern Florida, people ask me where they can go, and I cannot provide them with an answer. I thought I was given an answer recently, but was then told that that doctor is no longer allowed to do the procedure (for what real reason - the truth being unknown)..

In follow-up to what I wrote above, it seems that while many doctors may want to do the procedure, until more is leaned of CCSVI, the risks and benefits, it appears that many doctors, or their firms, or their insurance companies, may not want them doing the "liberation".

Be this as it appears, it may be awhile until enough is learned from procedure, before mainstream medicine decides if opening the veins is a beneficial.

Not much (New) info has surfaced from Zamboni or others in the medical field who months ago spoke so highly of the Liberation Procedure. Why is this?

Questions, questions??

And yet too there are answers and answers, from those who have undergone the procedure and are feeling better...

stu,i think these people posting videos enjoy the spotlight. warm feet isnt enough for me, a guy that cant barely walk, i need a lot more. as far as TIMS, if you read the posts it makes you want to run out and get it done right away because anything negative is discouraged on the site. its all roses...a little unrealistic...

Thank you yet again for an eloquent description of the facts. I had the CCSVI angioplasty performed 12 days ago in Sofia and did not get any stents. I cannot believe how much better I am & hope that this procedure becomes available worldwide soon. I have had results which I never even dreamed of!

Hi Marc,Thank you for all your hard work in bringing all this information to those who did not attend the CCSVI symposium. You are an inspiration to all of us. We applaud you.

I'm sorry to hear about your recent illness. I hope you are much better now, and your sweet wife Karen is giving you plenty of TLC.

I totally believe in CCSVI. I have not had the procedure yet, but plan to when I get called from the long waiting list. I could use an overhaul. Lol

I, too, wish your Mom a very Happy Birthday. You must have been quite a whip growing up. She deserves congratulations on her part, and praise for having such a wonderful son. (smile)Your friend,Lady (NT & BT)

Thank you Marc for your excellent report. I've read a few other synopsis' of this meeting and yours was the clearest and most comprehensive. I was strongly considering having the procedure done ASAP but I think now I'll wait a bit longer, at least until March when another large IR meeting will take place. I didn't realize that the IRs felt there was more to learn about the technique, size of balloon, etc. This was very informative and I so appreciate all you do. Hope you're feeling much better. Andrea W.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...